Dr. Mark Melaragno is a member of the Youth Challenge Board of Trustees and a Pathologist with the Cleveland Clinic.
Q. I have muscular dystrophy and am looking forward to summer
programs at Youth Challenge, especially swimming. What should I do (or
not do) to ensure a healthy and safe summer at the programs and in the
A. First, let’s start with a brief overview of muscular dystrophy (MD).
There are over 30 MDs, which are genetic (passed on in families)
diseases that cause muscle degeneration (breakdown) and result in
diminishing strength and contractures (tightening) of muscles.
The most well-known type, Duchenne MD, occurs in young boys. It is caused by the absence of a protein (type of chemical substance in the body) called “dystrophin” that is necessary to keep muscles from breaking down. Another type, Becker MD, is usually not as severe because boys with this disease have either decreased amounts or abnormal forms of dystrophin, instead of none at all.
Just like in the answer to the previous question (January 2013) about cerebral palsy (CP), no two boys with MD have exactly the same physical disability. But, since some degree of muscle weakness and contractures are seen in all types of MD, exercise routines and physical therapy are essential for all boys with MD to help manage these consequences. Muscles that are weakened begin to tighten and need to be stretched regularly to keep them loose and working for as long as possible. Physical therapists are specially trained to give advice to MD patients that will allow them to participate in activities that are appropriate to their abilities at each stage of their disease. As we have seen so far, a common theme with physical disabilities is that being more physically active in general is very important.
Finally, let’s address the question about a boy with MD who would like to swim at Youth Challenge this summer. The answer will be different for each and every boy depending upon where they are in the course of their disease. This is why it is critically important to have a multidisciplinary (from all fields that deal with MD) team of health care professionals, such as physicians, nurses, physical therapists and occupational therapists to consult with when it comes to a question such as this. To ensure safety and maximum benefit from physical activity in boys with MD, only a well-coordinated team of MD experts that regularly assesses and monitors a boy’s ability will be able to determine in which physical activities he should, or should not, participate. Or, to simplify the message, get the OK before you play. Regardless of what activities you are permitted by your management team to participate in this summer, get outside and soak up some vitamin D from the sun; it will help keep your bones healthy and strong. Plus, any time spent playing outdoors with friends at YC will be time well spent! Remember to use sunscreen, of course.
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“Dr. Mark” columns are not intended to be medical advice. They are intended solely for informational purposes and are not a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your doctor or other qualified health provider with any questions you may have regarding a medical condition.
Previous Ask Dr. Mark Questions
From January 2013 -
Q. I have cerebral palsy. Why are physical therapy and exercise important for me?
A. Before I answer this question, I should first explain the meaning
of cerebral palsy (CP). CP is not a specific disease but rather a name
that refers to any movement disorder caused by a problem area (also
known as a lesion) in either of two parts of the brain called the
cerebrum (that’s where “cerebral” comes from) and the cerebellum. These
lesions damage nerves in the problem area of the brain so their signals
cannot be sent to certain muscles, resulting in muscles that do not work
properly. The affected muscles experience paralysis (“palsy” is another
name for this) and/or spasticity (which means severe cramping). Signs
of CP appear in young children because whatever happens to cause the
lesion in the brain occurs while the baby is still in the mother’s womb,
during the birth process or shortly after the baby is born. Bleeding
into the brain, blood clots in the brain and decreased oxygen getting to
the brain are some of the most common causes of these lesions.
Not everyone with CP has exactly the same physical disability because
which muscles do not work properly depends on where in their brain the
lesion is located. But, since some degree of palsy and spasticity are
seen in all types of CP, physical therapy and exercise help all people
with CP manage these consequences. Physical therapy is often necessary
to train people with CP to use a wheelchair or to walk since they have
to overcome difficulties caused by paralyzed muscles. Muscles that are
cramping need to be stretched regularly to prevent a deformity (a
distorted or irregular bent position) from happening to the area of the
body affected by CP. Similar to the benefits of physical therapy,
regular exercise is also important to keep muscles working as best they
can. Being more physically active in general helps people with CP use
their abilities to deal more effectively with their disabilities.
Perhaps the best reason for everyone, whether physically challenged
or not, to stay physically active is the way it makes our whole self
feel better. Exercise can cause the release of chemical substances in
the brain (known as endorphins) that actually make us feel happier! The
same thing can occur just by laughing too. And, as anyone who has either
participated in or witnessed any of the Youth Challenge programs knows,
there are always a whole lot of both of those going on!
“Dr. Mark” columns are not intended
to be medical advice. They are intended solely for informational
purposes and are not a substitute for professional medical advice,
diagnosis, or treatment. Always seek the advice of your doctor or other
qualified health provider with any questions you may have regarding a